Bigby Christine, Douglas Jacinta, Smith Elizabeth, Carney Terry, Then Shih-Ning, Wiesel Ilan
Living with Disability Research Centre, La Trobe University, Melbourne, Australia.
Summer Foundation, Melbourne, Australia.
J Intellect Dev Disabil. 2022 Jun;47(2):165-176. doi: 10.3109/13668250.2021.1954481. Epub 2021 Aug 4.
Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them.
Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis.
Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk.
The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support.
支持参与决策是复杂、动态且多因素的。本研究的目的是更深入了解智障成年人的父母在提供决策支持时所遇到的困难以及他们解决这些困难的策略。
参与者为23位经常为其智障成年子女提供决策支持的父母。大多数成年人（19名）住在家里。在研究过程中，父母至少参加了三次半结构化访谈。我们采用社会建构主义理论视角和模板分析法进行分析。
研究结果分为三个核心类别，即做出正确决策、使决策支持变得困难的因素以及应对不确定性的策略，其中包括控制、影响、拓展成年人的视野和允许冒险。
所获得的知识将有助于增强父母提供决策支持的能力，从而更好地理解和尊重他们所支持的人的意愿和偏好。
